Michelle Beagan has Friedreich’s ataxia, which affects the brain and can impact movement, balance, speech and swallowing – as well being known to cause fatigue. Ms. Beagan is appealing to local political representatives in Fermanagh for access to the drug and to help raise the issue. The drug, which was approved last year, is called omaveloxolone and could cost £250,000 if purchased privately. "But in other ways, it was like a death sentence, I suppose, because I waited so long for a diagnosis. "How much this drug also would help them, because it would mean their mum would be able to do a lot more with them for a lot longer than perhaps without the drug."